{"id":29555,"date":"2024-08-13T15:15:55","date_gmt":"2024-08-13T08:15:55","guid":{"rendered":"https:\/\/mandayahospitalgroup.com\/?p=29555"},"modified":"2024-08-13T15:15:55","modified_gmt":"2024-08-13T08:15:55","slug":"testimoni-pengidap-fshd","status":"publish","type":"post","link":"https:\/\/mandayahospitalgroup.com\/id\/testimoni-pengidap-fshd\/","title":{"rendered":"Testimoni Pengidap FSHD yang Berjuang 12 Tahun Mendapatkan Pengobatan yang Tepat\u00a0"},"content":{"rendered":"<p><iframe title=\"Pengalaman Pasien Berjuang Selama 12 Tahun Melawan Penyakit Neuromuscular FSHD\" width=\"640\" height=\"360\" src=\"https:\/\/www.youtube.com\/embed\/1rgAsjCMOl0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p><span style=\"font-weight: 400;\">Menghadapi kondisi kesehatan yang salah diagnosis selama bertahun-tahun adalah perjalanan yang penuh dengan ketidakpastian dan harapan. Inilah kisah Ibu Siti Sarah yang berjuang selama 12 tahun menghadapi gangguan otot yang dialaminya. Di awal, diagnosis yang diterima adalah myositis. Selama 12 tahun Ibu Siti menjalani pengobatan sesuai diagnosis ini. Namun, perbaikan kondisi tidak kunjung terjadi. Akhirnya, Ibu Siti bertemu dengan dr. Luh Ari Indrawati, Sp.N, Subsp. E.N.K (K) dan ternyata diketahui bahwa penyakit yang selama ini dialami adalah Facioscapulohumeral Muscular Dystrophy (FSHD).\u00a0<\/span><\/p>\n<div id=\"ez-toc-container\" class=\"ez-toc-v2_0_71 counter-hierarchy ez-toc-counter ez-toc-light-blue ez-toc-container-direction\">\n<p class=\"ez-toc-title\" style=\"cursor:inherit\">Contents<\/p>\n<label for=\"ez-toc-cssicon-toggle-item-69d8318660248\" class=\"ez-toc-cssicon-toggle-label\"><span class=\"\"><span class=\"eztoc-hide\" style=\"display:none;\">Toggle<\/span><span class=\"ez-toc-icon-toggle-span\"><svg style=\"fill: #999;color:#999\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" class=\"list-377408\" width=\"20px\" height=\"20px\" viewBox=\"0 0 24 24\" fill=\"none\"><path d=\"M6 6H4v2h2V6zm14 0H8v2h12V6zM4 11h2v2H4v-2zm16 0H8v2h12v-2zM4 16h2v2H4v-2zm16 0H8v2h12v-2z\" fill=\"currentColor\"><\/path><\/svg><svg style=\"fill: #999;color:#999\" class=\"arrow-unsorted-368013\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\" width=\"10px\" height=\"10px\" viewBox=\"0 0 24 24\" version=\"1.2\" baseProfile=\"tiny\"><path d=\"M18.2 9.3l-6.2-6.3-6.2 6.3c-.2.2-.3.4-.3.7s.1.5.3.7c.2.2.4.3.7.3h11c.3 0 .5-.1.7-.3.2-.2.3-.5.3-.7s-.1-.5-.3-.7zM5.8 14.7l6.2 6.3 6.2-6.3c.2-.2.3-.5.3-.7s-.1-.5-.3-.7c-.2-.2-.4-.3-.7-.3h-11c-.3 0-.5.1-.7.3-.2.2-.3.5-.3.7s.1.5.3.7z\"\/><\/svg><\/span><\/span><\/label><input type=\"checkbox\"  id=\"ez-toc-cssicon-toggle-item-69d8318660248\"  aria-label=\"Toggle\" \/><nav><ul class='ez-toc-list ez-toc-list-level-1 ' ><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class=\"ez-toc-link ez-toc-heading-1\" href=\"https:\/\/mandayahospitalgroup.com\/id\/testimoni-pengidap-fshd\/#Awal_Gejala_Pengidap_FSHD\" title=\"Awal Gejala Pengidap FSHD\">Awal Gejala Pengidap FSHD<\/a><\/li><li class='ez-toc-page-1 ez-toc-heading-level-2'><a class=\"ez-toc-link ez-toc-heading-2\" href=\"https:\/\/mandayahospitalgroup.com\/id\/testimoni-pengidap-fshd\/#Tes_Genetik_untuk_Diagnosis_FSHD\" title=\"Tes Genetik untuk Diagnosis FSHD\u00a0\">Tes Genetik untuk Diagnosis FSHD\u00a0<\/a><\/li><\/ul><\/nav><\/div>\n<h2><span class=\"ez-toc-section\" id=\"Awal_Gejala_Pengidap_FSHD\"><\/span><b>Awal Gejala Pengidap FSHD<\/b><span class=\"ez-toc-section-end\"><\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Kisah ini dimulai pada tahun 2012, ketika\u00a0 pertama kali mengalami kesulitan bangun setelah shalat. Diagnosa awal yang diberikan oleh dokter adalah myositis, sebuah kondisi autoimun di mana sistem kekebalan tubuh menyerang otot.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Namun, meskipun telah menjalani berbagai pengobatan, kondisi Ibu Siti Sarah tidak menunjukkan perbaikan yang signifikan. Rasa penasaran dan kekhawatiran pun mulai muncul, mendorong Ibu Siti Sarah dan keluarganya untuk mencari jawaban lebih lanjut.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Setelah bertahun-tahun mencari jawaban, Ibu Siti Sarah akhirnya bertemu dengan dr. Luh Ari Indrawati, Sp.N, Subsp. E.N.K (K), dokter spesialis neurologi subspesialis epilepsi dan neurofisiologi klinis yang mencurigai bahwa kondisi yang dialami ternyata bukan autoimun, melainkan berkaitan dengan kelainan genetik.\u00a0<\/span><\/p>\n<p><a href=\"https:\/\/wa.link\/q7fb69\"><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-21882 size-full\" src=\"https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/Banner-saraf-kebas-kesemutan.jpeg\" alt=\"\" width=\"600\" height=\"218\" srcset=\"https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/Banner-saraf-kebas-kesemutan.jpeg 600w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/Banner-saraf-kebas-kesemutan-300x109.jpeg 300w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/Banner-saraf-kebas-kesemutan-24x9.jpeg 24w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/Banner-saraf-kebas-kesemutan-36x13.jpeg 36w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/Banner-saraf-kebas-kesemutan-48x17.jpeg 48w\" sizes=\"(max-width: 600px) 100vw, 600px\" \/><\/a><\/p>\n<h2><span class=\"ez-toc-section\" id=\"Tes_Genetik_untuk_Diagnosis_FSHD\"><\/span><b>Tes Genetik untuk Diagnosis FSHD\u00a0<\/b><span class=\"ez-toc-section-end\"><\/span><\/h2>\n<p><span style=\"font-weight: 400;\">Karena ada kecurigaan kelainan genetik, dr. Luh Ari mengarahkan Ibu Siti Sarah untuk melakukan tes genetik. Pada saat itu, menjalani tes di luar negeri seperti Singapura menjadi opsi yang dipertimbangkan. Namun, tiba-tiba mereka mendapat kabar bahwa tes tersebut bisa dilakukan di Jakarta, tepatnya di Mandaya Royal Hospital. Bagi keluarga Ibu Siti Sarah, ini adalah cahaya di tengah kegelapan. Mereka tidak perlu lagi menempuh perjalanan jauh untuk mendapatkan jawaban yang mereka cari selama ini.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Setelah melalui tes di Mandaya Royal Hospital, hasilnya pun keluar. Ibu Siti Sarah didiagnosis dengan Facioscapulohumeral Muscular Dystrophy (FSHD), sebuah kondisi yang mempengaruhi otot wajah, bahu, dan lengan. Diagnosa ini memberikan kepastian dan arah pengobatan yang lebih tepat, meskipun tantangan besar masih harus dihadapi.<\/span><\/p>\n<p><strong>Lihat Juga: Tim Dokter Neuromuscular Mandaya Royal Hospital Puri<\/strong><\/p>\n<p><img decoding=\"async\" class=\"aligncenter size-full wp-image-25844\" src=\"https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular.webp\" alt=\"\" width=\"1920\" height=\"1920\" srcset=\"https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular.webp 1920w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-300x300.webp 300w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-1024x1024.webp 1024w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-150x150.webp 150w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-768x768.webp 768w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-100x100.webp 100w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-1536x1536.webp 1536w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-24x24.webp 24w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-36x36.webp 36w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/06\/Jadwal-Neuromuscular-48x48.webp 48w\" sizes=\"(max-width: 1920px) 100vw, 1920px\" \/><\/p>\n<p><span style=\"font-weight: 400;\">Dalam perjalanannya, Ibu Siti Sarah menekankan betapa pentingnya dukungan keluarga. Keluarga adalah sistem pendukung yang paling dekat, yang selalu ada dalam setiap langkah perawatan dan terapi. Dukungan moral dan emosional dari keluarga memberinya semangat untuk terus berjuang, meskipun ada hari-hari sulit di mana tubuh terasa sangat lelah dan tidak berdaya.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Perjalanan panjang selama 12 tahun yang penuh tantangan ini akhirnya memberikan kepastian diagnosis yang benar. Bagi siapa pun yang mengidap FSHD atau kondisi kesehatan lainnya, cerita ini adalah pengingat akan pentingnya ketekunan dalam mencari diagnosa yang tepat dan betapa berharganya dukungan keluarga dalam menghadapi kondisi medis yang serius.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Jika Anda atau seseorang yang Anda kenal menghadapi gejala yang serupa, sangat penting untuk segera berkonsultasi dengan dokter untuk mendapatkan diagnosa yang tepat dan perawatan yang sesuai. Mandaya Royal Hospital siap membantu dengan layanan medis terbaik untuk mengatasi berbagai kondisi neuromuskular, termasuk FSHD.<\/span><\/p>\n<p>Gunakan fitur<a href=\"https:\/\/wa.link\/q7fb69\">\u00a0<b>Chat melalui Whatsapp<\/b><\/a>,\u00a0<a href=\"https:\/\/mandayahospitalgroup.com\/id\/buat-perjanjian\/\"><b>Book Appointment<\/b><\/a>, atau\u00a0<a href=\"https:\/\/caredokter.com\/download\/\"><b>aplikasi Care Dokter\u00a0<\/b><\/a>yang bisa di-<i>download\u00a0<\/i>di Google Play dan App Store untuk mempermudah kunjungan, melihat nomor antrian, dan mendapatkan informasi lengkap lainnya.<\/p>\n<p><a href=\"http:\/\/caredr.org\/mobile\"><img decoding=\"async\" class=\"aligncenter wp-image-21845 size-full\" src=\"https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/CARE-DOKTER-BAWAH-ronded.jpg\" sizes=\"(max-width: 600px) 100vw, 600px\" srcset=\"https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/CARE-DOKTER-BAWAH-ronded.jpg 600w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/CARE-DOKTER-BAWAH-ronded-300x109.jpg 300w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/CARE-DOKTER-BAWAH-ronded-24x9.jpg 24w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/CARE-DOKTER-BAWAH-ronded-36x13.jpg 36w, https:\/\/mandayahospitalgroup.com\/wp-content\/uploads\/2024\/03\/CARE-DOKTER-BAWAH-ronded-48x17.jpg 48w\" alt=\"\" width=\"600\" height=\"218\" \/><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Menghadapi kondisi kesehatan yang salah diagnosis selama bertahun-tahun adalah perjalanan yang penuh dengan ketidakpastian dan harapan. Inilah kisah Ibu Siti [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":29557,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[64],"tags":[1098],"class_list":["post-29555","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-artikel","tag-saraf","spesialis-saraf"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.7 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Testimoni Pengidap FSHD yang Berjuang 12 Tahun Mendapatkan Pengobatan yang Tepat\u00a0<\/title>\n<meta name=\"description\" content=\"Ibu Siti Sarah, pengidap Facioscapulohumeral Muscular Dystrophy (FSHD) membagikan kisahnya mendapatkan pengobatan yang tepat.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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